Jacob's Wilms’ tumour story

Our world turned upside down

On the night before Jacob was diagnosed we noticed that he had a slight lump in his stomach. We assumed it was probably a hernia and I decided to take him down to A&E to get it checked out. On 10th November 2015 after a number of tests were done at hospital, a doctor took me into a side room and sat me down and told me that Jacob had cancer. He was three years old. I was told that Jacob had what he thought, and was later confirmed, was a Wilms Tumour on Jacob’s left kidney. We were immediately told to go home, pack a bag and that next day we would travel to a hospital in Southampton that specialises in children’s cancer. Jacob then had a biopsy and we later found out that he had stage two kidney cancer and that the tumour, along with his kidney would need to be removed. He also had a Hickman Line inserted and started chemotherapy to try and shrink the tumour prior to surgery. Our whole world was turned upside down and whilst I stayed in Southampton with Jacob our family was split as my wife had to look after our other two children Joshua and Jacob’s twin sister, Bethany. The chemotherapy helped shrink the tumour slightly and Jacob was scheduled to have surgery on 15th December 2015. He underwent a nine-hour surgery and the tumour was successfully removed, along with his kidney. We even made it home for Christmas, despite hospital stays on Boxing Day and New Year’s Eve.

26 weeks of chemotherapy

Jacob then had to undergo a gruelling treatment of 26 weeks of chemotherapy to ensure that the cancer did not return. However, due to adverse effects of the chemotherapy on his young body he would have treatment on a Wednesday, be hospitalised on the Thursday and be discharged on the following Tuesday, so he spent the majority of eight months in hospital battling infection. During that time, mostly spent at hospital, we built up great relationships with the doctors and nurses and hospital staff as we were regular occupants on the children’s wards. We owe everything to them and cannot thank them enough for everything and what the Piam Brown staff did for us.

Ringing the End of Treatment Bell

Finally Jacob got to ring the End of Treatment Bell on 29^th June 2016. In fact he got to ring it twice as he got to ring it the following week at Piam Brown.

Today he is two years in remission post-treatment. He still has regular scans on a three monthly basis and the long term effects of chemotherapy has affected the nerves in his legs, eyesight and hearing, so he attends physiotherapy, orthopaedic and audiology appointments. Not to mention the mental and traumatic effect this has had on him. But we count ourselves lucky that he is as fit and well as we can hope and for all the kindness and love that surrounded us during this period. Without those people we would not have got through it, so we are thankful and grateful to our family, friends, all the NHS staff and charities that were there for us.

End of Treatment Bells are placed into hospitals for children and adults with cancer to ring after their gruelling treatment.

Update May 2019

Since our last update Jacob has had a number of checks, all of which have come back as clear I’m pleased to say. Although Jacob was registered as disabled last year, he’s just completed his first youth football season. He’s a fearless player and despite finishing his treatment under three years ago and only having one kidney, he hasn’t let that stop him achieving what he wants on the football field. He still suffers from leg pain due to the long term affects of Vincristine and often needs his legs stretched and massaged in the evening, but he loves playing football with his team mates and doesn’t let it affect his performance on the pitch.

Update January 2021

Jacob has recently had an ultrasound which confirmed that his remaining kidney is healthy and well and continuing to grow as it should be. Unfortunately cancer is a lifelong diagnosis and he is currently being treated for high blood pressure. That said, he is fit and healthy and well in himself. He is still playing football and is very active.

Jacob and his twin sister Bethany and older brother Josh had a great Christmas and were lucky enough to receive a personal message from Santa, courtesy of Children with Cancer UK.

We are very grateful for the help Children with Cancer UK provide and the ongoing support.